Katie Bergstrom, a Genetic Counselor based in Seattle, kindly shares a guest blog discussing some important considerations for both individuals and families when testing for Telomere Biology Disorders. Telomere biology disorders (TBDs) are hereditary conditions characterized by disorders related to telomere maintenance. You can learn more about TBDs in this dedicated blog. TBDs can be […]
To mark Rare Disease Day, we have a guest blog from Mike who is kindly willing to share his experience with familial dyskeratosis congenita. Hello, my name is Mike and I have a rare disease. It is called Dyskeratosis Congenita (DC) and it runs in my family. My father and my uncle (his twin) had […]
Durhane Wong-Rieger, President & CEO of CORD (Canadian Organization for Rare Disorders), has kindly shared this guest blog explaining why this year is so important for CORD and how they will be getting involved with Rare Disease Day 2020. Rare Disease Day 2020 – A Significant Watershed Every four years, International Rare Disease Day falls […]
In this special guest blog Katie Stevens, Executive Director of Team Telomere, shares her story of learning about telomeres, telomere biology disorders and becoming a member of the powerful community she now plays a leading role in. Before October 2012, I had only heard telomeres casually mentioned in a biology class… maybe? Little did I […]
To mark Pulmonary Fibrosis Awareness Month this September, we have a special guest blog from the Canadian Pulmonary Fibrosis Foundation (CPFF), to update on some awareness-raising activities and campaigns! CLARKE WALK OFFERS HOPE FOR THE FUTURE The month of September has been proclaimed as Pulmonary Fibrosis Awareness Month. All across Canada, people will band together […]
To show our support for Pulmonary Fibrosis Awareness Month we are pleased to share a special guest blog from the Pulmonary Fibrosis Foundation explaining what the symptoms of the condition are and how to get diagnosed. Persistent dry cough. Fatigue. Shortness of breath. These symptoms are sometimes associated with a passing virus, especially during the […]
Samantha Simmons, Coordinator of Marketing & Communications for the Pulmonary Fibrosis Foundation, shares a special guest blog explaining how you can support Pulmonary Fibrosis Awareness Month. Each September, the Pulmonary Fibrosis Foundation celebrates Pulmonary Fibrosis Awareness Month. We invite you to join us to raise awareness for those who have been impacted by pulmonary fibrosis […]